Hi everyone. I’m 28 years old and I’ve had CU since last 11 years. Surely there are good days and some really bad days that I wouldn’t even wish upon the worst enemy. Lately I get the feeling that CU is holding me back from lots of stuff that I should be able to do. And I can’t shake the feeling that my golden years have been down the drain because of CU. I have quitted two teaching jobs because of this and now I’m barely even struggling to find another because idk laziness, pain and hives got me. More often than not I think I’m going cynical. Been years since I felt myself happy. I don’t want to take anti depressants because I’m afraid meds will worsen my CU.
Any tips how you get by daily or find your zeal and energy to do whatever you have to do despite the flare ups or anything… Please share your experience. Help someone who is lost. Thanks
Kammy Eisenberg For the most part of 3 years , steroids was the only way I could get out of bed. Then on an occasional day when I felt like I could even be somewhat of a functioning human being I made sure to to something that made my soul happy.
Joyce Rosenblatt When I finally got xolair my life improved but I understand the unlying fatigue of continuing to deal with this disease. I hope you find the energy to cope.
Thea Wells I take the antidepressants and have been in therapy off and on, for this and other reasons. I’m pretty well controlled on Xolair now. I’ve also cut out wheat, which definitely helps. I’m sorry you are struggling. It’s a maddening condition to live with.
Muhammad Masood Thea Wells I’ll be damned. In my Pakistani culture wheat is the main meal. You can eat chicken, bowls full of rice, eat milk have dessert but meals not a meal unless you’ve tasted roti (tortilla) of wheat. Mistakes were made during diet
Thea Wells Muhammad Masood that would be very hard. I don’t know if I could do it without my family supporting. Our shared meals have been wheat free for months, which makes it possible. Here in the States we have a lot of good wheat free substitutes, and I live near Seattle so there are lots of options. It might be worth it to try for a few weeks and see if it makes a difference, but I understand if it’s not doable right now.
Michelle Pitts Caldwell So sorry. I feel for you. Here I am over 50 and feel like my life took a complete crap and I can’t get my way out of it. I have 2 young children who need me. I agree with you not wanting all the damn meds. I don’t either. I’m going to try a juice fast soon since I know that food makes me worse. It may sound silly but just making sure I get dressed goes a LONG way in how I feel and how my day goes. And that’s hard because I hardly have any that fit.
Sally Hill Magnesium baths, 1/8 tsp baking soda mixed with a little water and drink 1-2x a day. Vit C,D,B+, cbd oil ointment and drops (I use Embark, they have a website and ship in US), juice, and juice fast, eat clean. When I dont eat clean I flare. Xolair worked well, i had 2 shots in 2019, but it makes my hair fall out in buckets, so I try the natural route, my last flare only lasted 3 months
Lizanne McAdams-Graham Sally Hill I too flare up badly when I don’t eat clean. Just got through the holidays eating dairy (cheese and butter ingredients) And major flare up. Back to juicing and eating clean.
Sally Hill Lizanne McAdams-Graham yes! Its exhausting following all the eating rules! I want the cookie! I ate a couple peanut m&m’s and paid the price. If I eat clean though – no issues! But it is hard to do 24/7. I justified pumpkin pie was close to the earth, and my body quickly told me – no it is not and I had made the pie, total scratch!
Lizanne McAdams-Graham Sally Hill right! If I bake from scratch or just cook in general, I substitute eggs with chia seeds or applesauce and butter with vegan plant based.
This year I got cocky and cooked with eggs and butter and ate some of it…..I am paying the price. Major flare up like I haven’t had in a year. It’s crazy!
Lizanne McAdams-Graham Sally Hill I wanted to ask you, what is the purpose of drinking the baking soda? How does that help with hives?
Sally Hill Lizanne McAdams-Graham i have no idea, picked it up from our site
Lizanne McAdams-Graham Sally Hill I have to look it up😉
Connie Watts Has anyone ever tried you on xolair injections? It has given me my life back, I am hive free, the relentless itching is 70-80% improves.
R Nicole Beckington Meyer Have you looked in to virtual teaching jobs? Or, teaching English from home to Chinese children. Also, try cbd oil tincture, bath oil bombs, lotion and eliminate gluten
Muhammad Masood R Nicole Beckington Meyer I’ve rarely found good site. All I find are some scams or sites that want me to buy membership. You’d do me great honor and help if you can give me trusted sites for online teaching.
Bonnie Schultz Please take the word “laziness” out of your self description dear man! Laziness is when able bodied people choose not to do something
You are ill and choose to try therein is a huge difference!!
Sending positive vibes your way I’m a teacher too and had to retire from that career because of this illness Try Zolair, many have found it to be helpful
Diane Hancock Bonnie Schultz I thought the same thing. This disease can be debilitating. It is not ‘just hives’ that you can put up with.
We are all different and will all respond differently to medications and diets. But my tip to you (Muhammad) is try to be as healthy as possible. For me it was to heal my gut, with a strict diet. I still get the odd hive but I no longer miss out on work or social activities. And I still take medication (twice daily). But I have my life back.
Muhammad Masood I know I get carried away but despite everything it’s a fact I’m way behind. I used to love sports now I can’t even get out. My body is a wreck. Here’s to those who still keep going through every day n night. Even getting out of bed feels horrible
Diane Hancock Muhammad Masood And here, in this place, we all understand how you feel. I hope you find relief very soon.
Muhammad Masood Thanks everyone for the input and advices. I was on h1 blockers but they didn’t work and they also had me with their side effects. I’ll have to try things mentioned here. Here’s to the 2020 and getting better at everything. And to every unsung hero fighting with this shit or any other ✌️
Soren J Ateri Xolair was the only way for me
Carolyn Falconer Horne Hi Muhammad Masood, I related so much to your story. This is such a tough condition to live with and can make work or keeping any regular schedule nearly impossible. It’s not laziness. It’s realism. I don’t want to take a job I’ll fail at because I don’t want my professional reputation to become damaged. But I’m now working part-time online from home. Is that something you could do? I’d be happy to discuss that more if you’re interested. The other thing is, it sounds like you might not be on the right amount of medicine. Sometimes we need very large doses. And don’t rule out antidepressants. Think of it this way, you’re already getting hives, so it probably won’t be any worse. There are even some antidepressants that have antihistamine properties at certain doses. So I take the antidepressant Doxepin and it helps with hives and mood. Can you go to an immunologist? They have the most education about this and usually the best options. Mine gave me Xolair and it changed everything. I hope you find more help and feel better. Happy New Year! May it bring better things to us all…
R Nicole Beckington Meyer Carolyn Falconer Horne consider work at home positions like virtual teaching, Amazon or Hilton. Even mortgages are remote jobs
Cassandra Pandolfi I really feel for you 😢 I have had mine for 20 years on and off. The more I learn, the more I’m convinced that my Psoriatic Disease and CIU are caused by parasites and fungal imbalance. I’m experiencing wonderful results from taking Diatomaceous Earth (food grade of course.) haven’t had a hive in 2 weeks since taking it.